If we’d known before… Mr. Ralph Gaudet lost his wife, Mme Pauline Paradis-Gaudet, two years ago at the age of 74. She passed away after a stay in a CHSLD. She was a retired nurse who was much loved by those around her. However, the last years of her life were not easy. At the […]
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Brave as a dragon Loïc has just undergone a day of surgery because of his illness (Morquio syndrome). January 31, 2011: Our little man left with the doctors and nurses this morning. He was the bravest of us all. There wasn’t an ounce of fear in him. Loïc will undergo a wide range of surgical
Suffering in solitude Stiff person syndrome Hello, I have Stiff Person Syndrome. Emotional stiffness, loss of desire to see friends, because there will be emotions. Dizziness. Crossing wide open spaces – even when accompanied – makes my back cramp. Falls, loss of independence. Stiffness when people look at me. I thought I’d go mad. No
A winner is a loser who bounces back. Chantale, waiting for Charcot-Marie-Toothpolyneuropathy
At the age of six, Loïc, who suffers from Morquio disease, replied to a child who was staring at him one day in a shop: “I’m just a little more different than you. That’s right, like other kids, he plays field hockey, baseball, ping pong and karate! Loïc is taking part in a clinical
Russell-Silver syndrome On my thirtieth birthday, I went for my 20-week ultrasound. In the end, I didn’t find out the sex of my baby that day. We were so stunned that we didn’t even think to ask. The baby was severely stunted and the circulation in the cord was poor. The same day, we
Russell-Silver syndrome It’s my first pregnancy, everything’s going well, I’m not feeling unwell, I’m not putting on much weight, everything’s perfect. The delivery also went well, with no pain thanks to the epidural at 38 and a half weeks. Our lives changed the second Alec was born. We knew right away that something was up.
Maëlle, a rare little girl I’m the mother of an 8-year-old girl, Maëlle, who is autistic and has been suffering from an autoimmune neuromuscular disease, myasthenia gravis, for just one year. The incidence at this age is said to be one in a million. No one can explain why Maëlle developed myasthenia gravis at such
Mélissa and Olivier, sister and brother, with Morquio disease It’s time we did something about rare diseases…everyone pays taxes so we mustn’t forget them. These people suffer terribly, and what’s more, they feel isolated, so they suffer doubly. By doing research, we prevent other cases and we also make several discoveries for common diseases…just think
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Imprisoned in my own home You are the victim of a road accident, a workplace accident or a crime: you will receive compensation and services. You are over 65: you are entitled to home care services. If your illness is known and recognized as incapacitating, you will receive a disability pension. But if you’re between